Heading into 2016 on Wednesday, December 30, 2015

Dear family and friends,

2016 is nearly upon us. I am finally finding a quiet moment to to reflect back upon 2015. This was a milestone year for Oscar in many ways. There were many firsts, many growing-up moments.

As many of you know Oscar went to MDA camp for the first time this summer. Five days, five nights away from his parents. And he had a blast! He stayed in a cabin with other boys ages 6-9. He had a chance to participate in many fun camp activities like Nature Club where he got to hike in the woods, observe animals, and make projects out of natural objects. He also got to swim, do arts and crafts, participate in music and drama, hang out in a wheelchair accessible tree house, and zip-line in the woods!

For those who aren’t familiar, MDA camp is run by the Muscular Dystrophy Association in many locations across the country. It is for children ages 6-17 affected by any neuromuscular condition  that falls under the umbrella of the MDA. Each camper (as needed) has their own personal counselor to tend to their needs. We weren’t sure we were going to send our then six-year old to sleep away camp! But last year when we visited Oscar’s neurologist at Johns Hopkins he said, “Next year when Oscar is six he will go to MDA camp.” And we all hesitated. He then went on to explain the importance of attending MDA camp from the beginning: It is important for children to learn to rely on others for their daily needs (lifting and transfers, toileting, bathing, dressing, respiratory therapies, and much more). It is also important that kids with limited mobility have the chance to be around others like them, to be the rule instead of being the exception. His thoughtful explanation along with the countless tales we have heard over the years at the SMA conference from past MDA campers about those weeks being some of the most important of their lives convinced us that we all had to prepare to be away from one another for five days.

Oscar was extremely lucky to be paired with a counselor we had met the year before when we visited camp—and who Oscar had really hit it off with during that visit. She came to our house several times before the start of camp so she and Oscar could get to know each other better and she could learn the intricacies of his daily care needs. She happened to be a physical therapy student finishing up her doctorate—which gave us an extra level of confidence, and just by incredible chance she was scheduled to be the student shadowing Oscar’s physical therapist this past fall! We also feel so lucky that our local MDA camp is just 25 minutes from our house. We’re not sure how we would have handled it if our boy had been further away! As it were, we tossed and turned and stared at the ceiling the first night he was away. But we did make a point of going out to dinner several times and we enjoyed our time together as well.

This fall also brought many milestones to our family. At Oscar’s seven-year check-up in October we learned that he had grown three inches in a year and gained eight pounds in four months! With his sudden growth spurt we decided that he was finally ready to stay in his power chair while riding in the van, versus transferring to a car seat. This has been an exciting shift for Oscar and has also simplified things for us by reducing the number of lifts we have to do of this growing boy! Oscar also lost his first tooth this fall, and has a second wiggly one. He did not want to part with his first tooth so he wrote a very courteous letter to the tooth fairy asking if she would be willing to leave his tooth for him but still leave a treasure. And she complied! Oscar continues to participate in aqua therapy twice a week and he just loves being in the pool. This fall he worked his way up to putting his whole face in the water, and then eventually swimming underwater with no flotation device (usually he wears a neck ring floaty). He is so proud of his accomplishments and he continues to gain strength, flexibility, and bravery as he explores different ways of being in the water.


Oscar also started using biPAP (bi-level positive airway pressure—much like the CPAP people use for sleep apnea) at night this fall. This will help his breathing overnight stay more steady, and less shallow, and hopefully reduce the number of times he wakes at night! It can also serve to increase his lung capacity and improve overall respiratory function. So far it does seem to have had a positive impact on his sleep, though we are still working with the sleep center on adjusting the pressures to the optimum settings. Like with the introduction of any new medical equipment, we were both grateful that it exists and is available to us, and also feeling some trepidation about the introduction of a new intervention. Overall the transition has been pretty seamless, though, for all of us.

We had some traveling adventures this year as well. At the last minute we decided we needed to do something fun during spring break so we went overnight to Niagara Falls and stayed in a room overlooking the falls. In June we went to the SMA conference in Kansas City. As usual it was a delight to catch up with families we’ve met over the years, as well as meet new families. In August we made another last minute trip to Storm King Arts Center in the Hudson Valley. Oscar had really become enamored with the artist Andy Goldsworthy after watching a documentary on him so we thought it would be great to see one of his pieces in person, along with all the other massive and inspiring sculptures at Storm King. Indeed, it was a great hit! Also in August Oscar and David spent a weekend at Keuka Lake with friends and in September the three of us spent a long weekend at another peaceful spot along Keuka. In November we had another amazing weekend with aunt Linda and other favorite relatives in Baltimore, as well as our annual visit to the SMA specialist at Johns Hopkins. This was the first visit in which the doctor made no new recommendations at this time, which was a relief to us.

At Storm King with the sculpture Oscar calls "Red Beauty"

Storm King: Oscar with Andy Goldsworthy's Wall

David and I each made solo trips to Philadelphia this year, as well. David went for four days in the spring to have a much needed break from the day-to-day to visit my cousin and some old friends. This fall when we went to Baltimore the fellas drove home without me and I stayed an extra day in Baltimore with my aunt then took the train to Philly to have time with my cousin and to attend the National Guild for Community Arts Education conference, a very inspiring professional development experience for me.

Oscar continues to be very social guy, soaking up every moment he gets to spend with friends, all the while keeping a very busy after school schedule: aqua therapy, music therapy, massage therapy, and regular “land” PT. He enjoys school so much. He regularly answers that “everything” is his favorite and that there is nothing he doesn’t like about school! He continues to love to draw, and he has taken quite the interest in science—chemistry in particular—and quite specifically the periodic table of elements! Reading independently really set in toward the end of first grade in June, and since then he has been devouring chapter books alone, which is so exciting. We really miss reading to him, but just recently it seems he is willing again to let us read to him some of the time!

David and I each try to find time to do things we need and love: reading, writing, playing music (David), being creative in general, getting outside, walking (me), running (David), as well as finding time for ourselves as a couple. Overall we’re doing quite well.

SMA continues to pose challenges to all three of us, but we continue to find new ways to embrace these challenges, and to live life fully with open hearts. We often read or hear of people “fighting _______ (insert any number of conditions)” or “suffering from_______.” We find we do not approach our days this way, fighting or suffering. Yes, there are situations in which we advocate for better accessibility for Oscar, or work hard on Oscar’s regimen of activities for his respiratory and physical health, or research clinical care for SMA and try to educate our local health care providers on best practices for SMA. There are days we are tired, or sad, or mad, in which these feelings are somehow connected to the presence of SMA in our lives. But we continue to be filled with gratitude for all we have learned, all those we have met, the way our eyes and minds and have been opened—all because of SMA.

And of course, most of all, we are grateful for our boy Oscar, his bright smile, his thoughtfulness, his sense of humor, his creativity, and his endless curiosity about the wide world.

Wishing you and yours deep joys, unexpected delights, and good company in 2016.

Thanks for being part of our community.

xxoo
Sally, David, & Oscar

Coming Soon… on Wednesday, December 16, 2015

Our year-end letter will be here by the year’s end! Check back soon…

aaaaaaaand Oscar is sick again… on Wednesday, March 11, 2015

Oscar is on his fifth cold and/or nasty virus this season. Unless you count the relapse/secondary infection he had from one of those illnesses as its own sickness, then we’re at six. Every single illness has lasted a full week, except the relapse that lasted about four days, but that was the scariest of the illnesses, so it felt like more than a week.

A couple things happen immediately as soon as Oscar gets sick. For one, the respiratory regimen begins. This means nebulizer, cupping (also known as chest PT, which involves whacking him all over his rib cage with an inflated respiratory mask to loosen anything in his lungs), and cough assist every two hours during waking hours—and as needed overnight. In theory we can complete the “dance” as we call it in 40-45 minutes. And occasionally that happens. But usually when Oscar is sick the first couple days involve him needing to blow his nose every two minutes, so that slows things down significantly. If he has a fever then he is ornery to the point that everything becomes negotiation—I was an expert at stalling when I was a kid, and he has developed that same trait. Sometimes he is nauseous which makes him protest both cupping and cough assist because they both jostle his insides. Also, about 75% of the time, Oscar decides he hates cupping, that it’s like torture, and he screams how much it hurts, how we’re making him stop breathing, when we get a certain spot. (It’s all very dramatic: if Oscar doesn’t end up working at the UN utilizing his negotiating skills, he’ll surely be on stage or film exercising his dramatic talents…) So, often the dance can take a full hour, sometimes even an hour and fifteen minutes—at which point we have 45 minutes left until starting the next round.

Oscar doing a nebulizer treatment and "watching" on the iPad—one perk to being sick!

The other thing that happens is David and I start panicking. We have visions of the hospital. My breathing becomes shallow. My shoulders tense and rise toward my ears. My chest tightens. My guts start roiling. And usually I hold onto this until I am certain we are out of the woods. This year, with these several illnesses, this has usually meant 4-5 days, at least. During these tense days I will find moments to be mindful of my breath—to slow it down a little, and find moments to ask my shoulders to ease just a tiny bit. But eventually the exhaustion takes over completely and I become a tense zombie (if that were actually true, Oscar might be thrilled—he’s taken quite a liking to zombies in recent months).

So far this illness is presenting like “just a head cold.” But with SMA there is no such thing as “just a head cold.” Oscar’s immune system is on par with any 6-year old. The difference is that once he has a virus, the chance of it turning into something dangerous is much higher than that of another child not affected by SMA. He doesn’t have the strength to expel the mucous from his lungs, like the rest of us do—hence the intense respiratory regimen.

What is one of the best things for a person to do when sick? Rest and/or sleep. Except the respiratory regimen makes that almost impossible. Those 45-75 minutes in between get taken up so quickly with preparing food and coaxing Oscar to eat it, bribing him to drink fluids, taking him to the bathroom, repositioning him on the couch or in his bed, that there is almost no down time at all for any of us. I know David and I have both, at least once this winter while Oscar was sick, suddenly found that it was noon and we had not yet that day even thought about eating something ourselves. Never mind if we have to throw a visit to the doctor or a chest X-ray into the mix. Every one of his illnesses (except the current one, fingers crossed) this winter has warranted at least one visit to the doctor, if not two, and he has had two chest X-rays. Those days completely throw off the whole every-two-hours regimen and completely mess with any semblance of routine we have tried to develop during sickness.

Oscar stylishly showing off the instrument of torture—the cupping mask!

For all intents and purposes, Oscar has really not been sick in three years—since he had RSV and pneumonia that landed him in the hospital for nine days. He had a mild case of strep throat last year—no big deal. He has had a couple of minor colds each year—which after his colds this winter I’m beginning to wonder if they were bouts of bad allergies instead, because compared to the “just colds” he’s had this year, the “minor colds” from years’ past looked like birthday parties.

This winter, we’ve learned a lot about how Oscar’s body behaves when he is sick. When he has a fever, he gets nauseous. We know that now, and know that’s just the fever talking, and when the fever comes down, his nausea will subside. The first time it happened, we panicked that he had some sort of GI thing going on in addition to the respiratory illness. It was terrifying. Now we know to make every effort to treat the fever, despite Oscar’s wild protests. We have learned that a luke-warm bath does wonders to bring his fever down quickly—much more effectively than meds, if it is a fever of 102 or more. During one illness his fever made him look so terrible we were certain we were headed to the hospital. After ten minutes in the bath, he was singing and playing.

During one of the earlier illnesses this year we started a notebook to keep track of all Oscar’s meds and stats—because we just couldn’t keep all the numbers in our head otherwise. Albuterol nebulizer (can only be given every 4 hours, unless he is really laboring to breathe and his doctor says we can up it to every two hours), Saline nebulizer (used in between albuterol treatments), Pulmicort nebulizer (when he is sick we switch his usual twice-a-day Flovent inhaler to a twice-a-day Pulmicort nebulizer treatment—making the early morning and the evening dance that much longer), Tylenol (can be given every four hours), Ibuprofen (can be given every six hours—and if the fever is really bad we can give both together, we just still need to respect the 4 hour and 6 hour intervals of each medicine). In addition we now have an O2 monitor so we check his oxygen every few hours (more often if he seems like he’s struggling) and write those numbers—along with his temperature—down, too.

Sunday night, the first night of this illness, when I was putting Oscar to bed—and David was out at the grocery store—Oscar asked me some “what if” question regarding his illness (What if I get a fever? What if I get a bad cough? What if I wake up in the middle of the night feeling terrible? What if you get sick?—any one of the many what ifs we all wonder when he is sick). And I said, “It is what it is. We will all do the best to take care of you and ourselves. That’s really all we can do.”

I don’t know if it was saying those words out loud, or the fact that so far Oscar just isn’t as sick as previous illnesses this winter (he has not yet woken up in the middle of the night asking for cough machine or neb, and has not yet a had enough of a fever to really affect him), or the fact that I started writing this blog post at 5 a.m. Monday morning when he did wake up asking for neb and so the writing is having a therapeutic effect, or that I’m just used to this by now, but I am not panicking—for the most part—this time around.

We are on illness number five. One of those was quite possibly the scary respiratory virus Enterovirus that was going around this fall. Another came with a high fever and some truly concerning respiratory symptoms. And the secondary infection he had was terrifying from a respiratory standpoint. And yet he fought each one off at home. Going to the hospital is commonplace for SMA families—so truly we are lucky this winter.

I wish I knew what was allowing me to not panic this time, and how to bottle it for the next illness, because the panic can be paralyzing, all-consuming. I know the anxiety doesn’t help anyone in the situation. But it is so hard in those moments to not travel ahead in my mind, to where we could be headed, instead of staying present in where we are—at home.

So, for now, I guess I will take these past few days for what they are—after a hard winter of illness—a gift.

The Year in Review on Thursday, December 18, 2014

We had many adventures this year! Here are a few highlights and snapshots…

First grade!

Right now, the biggest adventure of 2014 feels like first grade. Oscar loves, loves, loves first grade! Oscar came home from kindergarten every day last year with a report that his day was “AWESOME!” Repeatedly this year Oscar has said, “First grade is SO MUCH BETTER than kindergarten!” Oh, how we hope this enthusiasm and joy for learning sticks. At Oscar’s teacher conference earlier this month, his teacher, Mrs. Beato (who is so amazing—we feel so blessed) reported that regularly when she announces an activity that the class is going to do Oscar’s response is a “YESSSS!” accompanied by the fist/pull-back of the elbow gesture of excitement. She said even when it is a small activity that she expected no real response to, Oscar’s enthusiasm is palpable. We feel so lucky that his joy and zest for life and learning is so intense. That’s just who this boy is.

First day of first grade!

Oscar’s kindergarten  day was a half day, and he has made the transition to the full day very well. Though he is often tired in the evening, and goes to bed much earlier than he used to, he’s delighting in that full day of school so much. It has definitely been a big transition for our whole family: Oscar has a whole lot less down time—even after school he has aqua therapy, physical therapy, music therapy or massage therapy a minimum of two days a week, but usually at least three. Since he goes to bed earlier now, our evenings as a family have been cut short, from what we were used to. And Ghi Ghee (my mom) is missing her two (or more) afternoons a week she used to spend watching Oscar while I was at work. I have been surprised that first grade has been a bigger transition for ME as mom than the transition into kindergarten was. Now that he is in school full day, he has a whole life outside of us, and away from me. I was used to him giving a blow-by-blow of his day in school. The day is too packed for him to share it all now. As much as we miss hearing everything, we are so proud of him that he is becoming independent and learning to navigate through the world without us.

Creative Endeavors

In the spring, David played a show at Writers & Books and on the last song, Oscar unexpectedly joined him on cymbal, intuitively knowing just when to crash with the drumstick, and when to play softly with the brush.

Oscar continues to draw. This is a storm trooper with a tooth brush.

And every so often on a Thursday night David can be found spinning records at one of our favorite restaurants, Good Luck—always advertised for with a handmade flier…

David and I worked hard at finding time for our own creativity, carving out little moments when possible. David played a few shows this year, took a couple of fiction writing classes, did some recording, wrote some short stories, and took some great photographs. I finished taking an 8-month memoir-writing class at Writers & Books, joined a new writing group, and even spent two days and two nights at the W&B Gell House, in the woods, alone, writing!

My view for two days of writing at the Gell House.

AND for the first time ever, in our twenty-year relationship, David and I joined our creative forces by creating a show for the Rochester Fringe Festival. The show, Are You Able?, combined music, spoken word, and images (mostly of Oscar, and artfully compiled and presented by our dear friend Tom Kowal). As we always strive to break the physical barriers that might keep Oscar from accessing the world in some way, this performance piece hopefully sparked some conversation to help break psychological barriers that can exist between the able-bodied, and other-abled.

Friendship

Oscar participated in his first field day at school at the end of his kindergarten year. His PT, 1:1 and all the staff—and students!—helped really make all the activities accessible to him.

Oscar’s social life continues to expand. First grade seems to be the perfect environment for blossoming friendships—in fact Oscar’s 1:1 says she has stepped back quite a bit this year because 1. Oscar is becoming more independent and 2. his peers are stepping in to help him more this year. With a longer school day, he also has more opportunities to develop friendships—we hear stories from the playground, lunchroom, and classroom each day. Oscar and his pal Anne (who was also in his kindergarten class) have become quite close this year:

Dracula and Candy Corn trick-or-treat together.

And a trip to the George Eastman House to see the gingerbread houses:

Over the summer we were able to have a long overdue reunion with some dear friends. After 5 years away from one another, there were many laughs and good times!

Sarah, Dave, Lucas, Hailey, and Scarlet, who are like family to us.

And Thanksgiving was another delicious and successful endeavor with our dear friends—this tradition is 9 years in the making, now.

Fellas full of love on Thanksgiving: David Andrew, David Michael, Oscar, & Tom.

Sacaduros! The magic of Thanksgiving. Donna, Monica, & Sally overtaken by the magic after a long and joyful day of cooking, moments before digging in.

Summer

We had another amazing trip the the Families of SMA conference. In case you missed our blog post on that, you can see it here.

At the FSMA carnival night!

We celebrated Oscar’s cousin Emily’s high school graduation.

Oscar had his first summer camp experience at Writers & Books (where Sally works) and it was a big hit! He took 3 weeks: Fairy Tales, Magic Tree House, and Musical Sandbox.

One chilly and rainy summer weekend, we set our tent up in our back porch and slept (almost) outside!

We took Oscar to Sea Breeze, our local amusement park, for the first time this summer, and he had a blast! They were very accommodating to Oscar’s needs. He really enjoyed this airplane ride with his dad, and also the Lazy River in the water park, which we went on five times!

Health and Well-Being

Oscar is doing great! Aside from a pair of week-long illnesses this school year, including what was possibly the dreaded enterovirus, his health has been been pretty ship shape. All of of his therapies are proving to be beneficial, and we are thrilled with his therapists! Oscar increased his aqua PT to twice a week this fall, and it has been great! He has gotten very brave about putting his face in the water, and has held his breath for a record 56.75 seconds! The water is great for his strength, flexibility, and respiratory health, and he loves it!

Some more moments from 2014…

We end the year in gratitude, for one another, for all of you.

Oscar at Durand Eastman Park, 2014, or is it Bob Dylan circa 1970?

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